Love, marriage and special needs

By Robyn Monaghan

Contributor

One of the reasons marriages are more prone to divorce is that
care for the child often overrides everything else in the
family.

2. Embrace your differences.

Differences are amplified when disability enters the family.
Couples differ in emotional reactions, future expectations,
discipline and educational and medical treatments. Couples should
ask: "What is good about the fact that my partner has a different
point of view on this?"

3. Take care of yourself.

Parents need to learn that they will be no good for their
children, or have anything to give to their marriages, if they do
not also protect some time for themselves.

4. Become a team.

Couples often divide responsibilities in a way that is practical
in the short run but can cause problems longer term. Becoming a
team also requires making space for genuine co-parenting while
giving up some control.

5. Protect romance and sexual intimacy.

Loss of romance and sexual intimacy is one of the many problems
amplified in couples raising children with disabilities. Many
disorders result in sleep problems and increase the likelihood that
children sleep with their parents or a couple is too exhausted to
have the energy for sex.

6. Practice forgiveness and realistic
expectations.

There is a tendency to form unrealistic expectations of a
partner simply because the pressures can be so great. Because
resentments then build easily, it is important for couples to
practice forgiveness when appropriate.

Source: Married With Special Needs Children, Laura Marshak,
Ph.D., professor of counseling at Indiana University of
Pennsylvania and a psychologist at North Hills Psychological
Services in Pittsburgh, where she works with parents of children
with disabilities.

It was Mother's Day and family law attorney Ana Marcyan was
folding laundry in her Clarendon Hills home.

"Baron's on the roof," she heard a neighbor call outside.

After a nightmarish afternoon with what looked like a SWAT team
of rescue workers trying to lure her 6-year-old son with autism
safely from the shingles, Ana's husband came home with their other
two children.

"Why weren't you watching him?" she remembers Carl Marcyan
asking.

A series of similar stories about 12 years ago landed the
Marcyans in a court-mandated divorce mediator's office in DuPage
County.

Instead of saying "You're right, Ana," as she expected, the
counselor pointed out that there were no drugs, alcohol, gambling
or extramarital relationships muddling her marriage.

What was coming between them was the sheer fatigue of caring for
a low-functioning son with autism who had a penchant for stripping
off his clothes, slipping out a window and following the white
lines down the street.

"That's when I realized something I'd heard before-that love is
a decision," she says. "We decided to keep loving each other."

The Marcyan divorce was off.

Ironically, Baron's dad is now a family law attorney who
specializes in divorce between parents of children with special
needs.

After the diagnosis

Until recently, conventional wisdom has pegged the divorce rate
in families with autism at around 80 percent. But new research is
debunking the myth that relationships for parents of children with
disabilities are statistically doomed.

A 2010 study by researcher Brian Freedman, clinical director of
the Center for Autism and Related Disorders at the Kennedy Krieger
Institute in Baltimore, found that children with autism live in
homes with both parents 64 percent of the time, compared with
children in families without autism at 65 percent of the time.

The new findings may assuage a little bit of the pressure that
plagues parents of children with special needs.

About a quarter of Buffalo Grove therapist Amy Bash's practice
is working with parents of special needs children. A mother of a
child with special needs herself, Bash says the most common issue
that brings parents into counseling is grief.

"Special needs parents face the complicated, consuming,
frightening and challenging task of raising the child they have,
while letting go of the child they dreamed of," she says.

Grief in the gender gap

What can rip vows asunder is the thorny reality that husbands
and wives grieve in different ways.

Women are socialized to talk about their feelings, while men
often believe they should be stoic in order to be supportive of
their wives, Bash explains. Mothers will take on the role of
seeking help and therapies, meeting with school staff and health
professionals, exploring research, and providing the special care
required. Moms tell Bash about their feelings of isolation and
their shortage of time to take care of themselves.

Ana Marcyan tells of her loneliness at home with Baron as Carl
took Baron's siblings to weekend soccer matches and movies.

"It was impossible to get a babysitter," she says.

Men, Bash finds, get "lost in their role when they can't be the
fixers," she says. It is the father who is most likely to retreat
to the safety and consistency of his work. Dads, like Carl Marcyan,
say they rarely get a break if they go from work to home, where
child care and chores await.

"It got to the point where I was actually glad Monday morning
was coming because the stress at home was so intense," he says.

Bash also says fathers feel extra pressure to make enough money
to pay for therapies and medical supplies.

Emotionally enmeshed

Laura Marshak is the author of Married With Special Needs
Children, a book detailing the romantic pitfalls of parenting
children with disabilities. She sees a lot of parents who love too
much-but not each other.

"The quality of the emotional relationship between husband and
wife has an impact on closeness with a child," she says. "If
unhappy, a parent may turn more to a child."

It's a recurring marriage buster both Marcyan and Bash see when
they work with families. The "enmeshed" parent may become
overprotective, over-involved and overly controlling.

At the other end of the spectrum is another homewrecker familiar
to both Marshak and Marcyan. It's the parent who takes the
"head-in-the-sand approach" by minimizing the child's disability,
rejecting all diagnoses and insisting their child simply will grow
out of the problem.

For better rather

than worse

Where can couples turn to keep from winding up in Marcyan's
office negotiating a visitation schedule? Social support with
friends and family, along with advocacy and support groups, is key,
Bash says.

A good way for couples to support each other is to trade off
parenting responsibility by swapping time when one is "on" for
parenting. But carving out time together as a couple is critical,
too. Finding respite services if family or friends are not
available is a must.

"If time is not set aside, exhaustion is the result and the sex
life and the emotional intimacy is diminished," Bash says.

But the absolute best predictor of successful marriages is the
ability to resolve conflict and develop resiliency. Communication
and "fair fighting" skills are key in any marriage. Resentments
develop when parents don't stand up for their personal needs.

Bash helps her clients realize they may not have control over
the challenges that life presents, but they do have control over
what they think about the events.

"I encourage clients to do what they need to do, but surrender
the control of how it is 'supposed' to happen," she says.

In the Marcyan household, where both parents are divorce
lawyers, "nobody is afraid of the D-word," Carl Marcyan says.

Yet he and Ana stepped back off the ledge when they realized in
the counselor's office that day that theirs was a manageable
problem. The mediator told them to go across the street to the bar
and work things out.

"That's when we came to the conclusion that for better or worse
really means for better or worse," Ana says.

Staying together through special needs

1. Protect your marriage.

One of the reasons marriages are more prone to divorce is that
care for the child often overrides everything else in the
family.

2. Embrace your differences.

Differences are amplified when disability enters the family.
Couples differ in emotional reactions, future expectations,
discipline and educational and medical treatments. Couples should
ask: "What is good about the fact that my partner has a different
point of view on this?"

3. Take care of yourself.

Parents need to learn that they will be no good for their
children, or have anything to give to their marriages, if they do
not also protect some time for themselves.

4. Become a team.

Couples often divide responsibilities in a way that is practical
in the short run but can cause problems longer term. Becoming a
team also requires making space for genuine co-parenting while
giving up some control.

5. Protect romance and sexual intimacy.

Loss of romance and sexual intimacy is one of the many problems
amplified in couples raising children with disabilities. Many
disorders result in sleep problems and increase the likelihood that
children sleep with their parents or a couple is too exhausted to
have the energy for sex.

6. Practice forgiveness and realistic
expectations.

There is a tendency to form unrealistic expectations of a
partner simply because the pressures can be so great. Because
resentments then build easily, it is important for couples to
practice forgiveness when appropriate.

Source: Married With Special Needs Children, Laura Marshak,
Ph.D., professor of counseling at Indiana University of
Pennsylvania and a psychologist at North Hills Psychological
Services in Pittsburgh, where she works with parents of children
with disabilities.